An Australian boy's fight against Neuroblastoma, a lethal childhood cancer

Thursday, January 5, 2012

Merry Christmas and Happy 2012

We had a wonderful Christmas with Dylan's Nana (In photo) and Cousin Odin, here for 4 weeks visiting from Australia, it had been so many years since we were able to spend the holidays together. They left New Year's eve and we welcomed 2012 with a quiet night at home, content with the ending of 2011. Thank you to everyone for your gifts and cards and thank you to the "Very family" who did their yearly Christmas fund raising in NJ for our family, which enabled us to get Cain a new itouch and catch up on the lingering bills of 2011.

2012 brings us a new Clinical study for Dylan, the humanized antibodies that we have patiently waited to get to triple dose for us to start. We are very excited but reserved at this being the cure. It's well worth the try and given the low side effects and research, it does sound promising and as we all know with this cancer, it is very individual to each patient and it just might be the "one". We venture into this treatment with the usual hope of every one we try, and pray that this is the right track for getting Dylan cancer free. It all started yesterday with blood tests for HAMA & HAHA, then tomorrow an EKG, MIBG injection, CT scan, then MIBG scan Saturday and Monday Echo, Bone Marrows & MRI of the brain. Dr Modak said we could start the treatment as early as next week! Dylan is ok with it, his main concern is the brain MRI, he hates them out of all the tests. He is very happy that commencing treatment means "no school" typical 13 year old! It has been a long time since we spent long days at hospital, and the thought is a little scary, but I am sure we will settle into the old routine like putting on a pair of old shoes we don't really like to wear. Dylan is actually sitting next to me right now singing "I don't have to go to school til Wednesday!" It may be the whole week in actuality if we do start therapy next week as planned. As he cuddles Bear, he asks me the schedule ahead and seems pretty fine with it. He really does amaze me so much.Well, I will fill you in on the treatment regime as soon as I know it and of course how he does with it. Humanized antibodies was developed because of the issue of children like Dylan who develop as resistance to the mouse antibodies (3F8) known as a HAMA (which Dylan has had for years) The new Humanized antibodies do have a risk of rejection known as HAHA but it is minimal and so far goes away pretty fast with the kids who have developed it. The Humanized antibodies have also been "tweaked" to make then much more effective with receptors and other technical things I don't really understand. When they start new therapies the dose is very small, but now they are up to triple dose and since Dylan has run out of other options, we are going to start at this dose. Dylan's cancer remains stable in his hips, pelvis, spine and femurs, and it's a race against time to get it gone before it progresses. We have been so fortunate to have him stay stable for so long, and we certainly want to keep it that way or even better, a cure! 7 years in treatment in New York, it's been such a long road so far.